Six months on from Neobladder Op

It's been 6 months since my Cystectomy and Neobladder reconstruction, and it's been an utter nightmare. I would never have believed it possible, but I'm in more pain now than I was before. I requested a Mitrofanoff primarily, as I wasn't convinced that a Neobladder wouldn't work. When I expressed my concerns to the consultant, he said the pain that I feel at the bladder base (which is where it was worse) would be referred pain from the rest of my bladder. He came to a compromise that it when he did a cystoscopy before commencing the surgery, if that trigone looked intact, he's save it. If not he'd remove it. As nothing was visibly wrong with it, which I found hard to believe given the amount of trauma from catheter damage, he left it in. I wish he'd listened to me.

I contacted E-Coli in hospital. I had 3 months of constant infections. My stents were forgotten about and were left in for 3 months. The Superpubic catheter was constantly blocking due to all the gunk from the infections, and unblocking it was very painful. Although the burning and stinging pain has gone, the pressure pain has doubled, and I am still aware of every drop of urine in my bladder. I'm using 30 catheters a day, and my urethra is understandably, red raw. Oh, and I had to call an ambulance when my Superpubic catheter split and urine started leaking from the site on my belly.

I had another cystoscopy in January this year, which showed everything looked fine, and there was no visible damage from the infections. My consultant then wrote to me suggesting, with my permission, injecting Botox into the trigone. But after over a month of waiting for a letter confirming a date, and then 3 unanswered messages, I was finally informed that the Urology department doesn't have the funding for it.

His secretary (whom I have nicknamed Miss Snooty, as she is the rudest and most uncaring person I've ever had the displeasure to speak to), told me it was being taken to the committee, but there's no guarantees and I'll have a long time to wait.

My GP, by contrast, has been absolutely wonderful. She's prescribed me Oramorph and Diazepan (oral morphine and Valium), although they are not having much effect now I've taken them for a period of time.

Personally, I think I need a Mitrofanoff made, the trigone and top of urethra completely removed, and maybe a nerve block for the pelvic pain. I've been housebound for nearly a year now. Despite losing two stone after the op & infections, I've put it back on again, because I can't move far due to the pain. To top it off, the DWP booked me an appointment at a centre 30 miles away to have a medical assessment (by a nurse!!!) to have my ESA benefit reviewed. This despite me informing them I was housebound, and can't be away from a toilet for more than 10 minutes, can't tolerate the jolting of a car, and can't travel on my own. They are also refusing to admit they have received faxes from my GP and consultant confirming this. Apparently, our benefits agency, dealing with health assessments for the whole of the UK only has the one fax machine.

I am absolutely exhausted and in so much pain, I'm on the verge of giving up entirely.

I've had another Cystscopy last week and it was all okay, nothing suspect was found. My consultant said he'll think of options for plan B.

Not sure if Urology can do much more for me in respect to the pain and spasms. I'm wondering if I'll be referred to a pain clinic. I'm waiting for a letter from the consultant as to what to do next.